I set up this blog four years back just to give awareness about Morquio, and I can't believe that I'd be giving a talk to share experience on raising children with rare disorder at a conference. One of the organizers of the conference actually found this blog and contacted me inviting to be one of the speakers. Why not eh? The topic is really close to my heart and I'm sure the words will flow out smoothly from my mouth.
The kids are doing fine; they are having their mid year exam this week and will have their school holidays for two weeks beginning end of this month. There is no appointment coming, the closest one would be in July with the spine specialist. On top of seeing the specialist and get conventional treatment, we brought the kids for an alternative treatment too. So far so good, the kids have good appetite and show a very positive attitude to heal and grow bigger and taller too, I hope :-)
We have been invited to the launching of Malaysian Rare Disorders Society’s (MRDS) book “Rare Journeys of Love” this weekend. I can’t wait to get one. I recently read a book “Atiq Wazif – Satu Anugerah”, a very touching real story about bringing up a special child, went everywhere (China, Middle East and the USA) to get treatment for the special child. I’m just thankful that I wouldn’t have to get that far of an effort to raise Adnin and Aqilah. They are pretty independent in managing themselves that we only have to monitor and help them a bit, here and there. The only challenge is to answer their questions of why they are like that and when are they going to be cured. Children with MPSIVA have normal intelligence, they think like children of their own age. I guess I have to play more on psychology to instill positive attitudes in them, so that they can be successful like others even though they are physically small.